Allistaire’s ANC hit zero yesterday! It may seem a bit twisted to be excited about Allistaire having no functional immune system today. I do recognize that as she plays with that little soccer ball, rolling it all over the floor, picking it up and over, that who knows what scary stuff is getting on her hands. The door to her little body is opened wide for whatever little bacteria fellows and virus monsters want to creep or swoop in. So while I’m certainly not wanting her to get sick, I personally like seeing that fat little zero that shows me chemo kills – it destroys and I hope and pray those pesky cancer cells are no more. I can tell you that the 2-inch ball that was her lymph node in her arm pit is now about the size of a few peas. The area on her back where her biopsy was is nearly flat. In the week after her biopsy which removed the lump as completely as the surgeon was able, a wide bulge under her back grew in only days time. The new bulge was far larger – probably more like 4 by 3 inches versus the original lump which measured 1 by 2 centimeters when it was originally decided it needed to biopsied. More about these more external evidences of her cancer in a bit.
At last I have a bit more information about the days ahead. In the past week I have had to repeatedly adjust my ideas of what was going to happen with Allistaire to the reality of what is planned for her. The morning of her birthday I called Laurie, the Search Coordinator at SCCA (Seattle Cancer Care Alliance). I wanted to check in on the progress for the bone marrow search. Her first statements were that she had “some really nice cord blood units,” for Allistaire. It felt a bit like heading to the car dealer for a Porsche and being told you could have a really nice Toyota Corolla. Corollas are nice for some people, but certainly not for you and who in the world can be excited about something that is nowhere near what you were hoping for. I immediately felt frustrated and annoyed – who cares about cord blood units – those are easy, sitting around in some little freezer somewhere. Okay, what I really see is the actual umbilical cord sitting as though it had just been chopped off, laying in a safe deposit box sort of thing. “What about the donor search?” I exclaimed. First she tells me that their main priority is to look at cord blood which is immediately available so that if the patient needs to move swiftly to transplant, they already have an identified and viable option. “Yeah, yeah, yeah, so what about the donor search?” I exclaimed. I could not have possibly anticipated the absurdity of what she was about to say. “Your insurance does not cover the donor search.” Fear. Anger. Horror. Shock. “What?!” So it turns out that brilliant Blue Cross Blue Shield of Montana covers the entire cost of the transplant for Allistaire, the procurement of the bone marrow from the donor and the testing costs associated with the “identified donor.” What this means is that they pay for everything except finding the actual donor. Laurie, as the Search Coordinator, is able to get initial matching results from the National Bone Marrow Registry (the “www.bethematch.org” many of you have registered with), however, this is really just the first step. Once possible matches have been identified, the donors must be contacted and have a number of additional tests conducted. In Allistaire’s case there were around 25 possible matches which would be narrowed down to the best 4 or 5. Only the actual chosen donor qualifies as the, “identified donor,” so all of the testing of these best 4 or 5 is not covered by insurance. My mind was racing and I just really couldn’t believe the stupidity of the situation and anger swelled in me as I realized that Allistaire might not have the best of what she needs because of money. How utterly foolish of the insurance company – the best match gives Allistaire the best chance of surviving with the fewest complications. Maybe that’s not all that important to Blue Cross Blue Shield of Montana but it IS TO ME! Pay the money up front and pay less down the road – is that not obvious?! Despite being a person who really struggles with anger, I can honestly say that I have not experienced a lot of anger in this situation with Allistaire’s cancer until now. “So what are we going to do?” Apparently the National Bone Marrow Registry also has a foundation which, if you are approved, can pay 1/3 to 1/2 of the testing costs. Laurie also said that she could be very strategic in what testing to request so as to minimize cost and maximize the info it would give us about the markers that need to match. All I could really think about were Dr. Pollard’s words that we needed to find a donor as fast as possible so that Allistaire would not have to have more rounds of chemo simply due to timing with a donor. So, the search had not really even begun and here we were over a week and a half into this thing. With heavy heart I greeted Allistaire that morning of her birthday.
Later that day as Allistaire was getting her expanded cord blood cells, Ann Dahlberg, one of the bone marrow doctors conducting the clinical study Allistaire is participating in, was talking with Dr. Julie Park, one of the attending doctors. They asked how I was doing and I said that perhaps they could give me their opinion. I relayed the situation about our insurance not covering the bone marrow donor search. I had asked for a meeting with Dr. Chow for that afternoon, since our Dr. Pollard was on vacation. The next moment makes me smile. Dr. Park, in her sassy tiny way, basically said, that No, this was not going to be an issue, this would not prevent anything that Allistaire needed, that she thought the hospital would cover that cost, and that she was on it. No need to keep the meeting with Dr. Chow later that afternoon, she would get this thing figured out. Though Dr. Park is the neuroblastoma guru doctor and not our own, she has been our attending doctor on service enough for me to know this lady means business and is fully competent. She’s sort of a super skinny fire ball. Yes, I had prayed to God – handing this scary situation over to Him earlier in the morning and I was delighted to see it carried off down the hall, out of my hands.
The next morning another phone call brought unexpected, heavy news. After the conversation with Laurie the day before, I was feeling frustrated and unclear on who was really in charge of making these decisions about transplant on Allistaire’s behalf. On one hand is Dr. Pollard who is the queen of AML and has known Allistaire for 16 months and who told Sten and I that our first desire was a Unrelated Matched Donor (because neither Sten, I nor Solveig were matches) and the next best would be matched cord blood. On the other hand are the folks at SCCA who actually conduct the transplant process. My perception that the donor search was delayed and that there was an over exuberance about cord blood was unsettling me. As I sat in Starbucks eating my breakfast, I received a call from Dr. Ann Woolfrey who is the physician who reviews each patients case as decisions are made for the best suitable “blood product,” for transplant. Essentially Dr. Woolfrey told me that there would be no donor search due to the extremely high-risk status of Allistaire. Two things I did not like – no donor search and very high-risk. What it comes down to is that we need to move as quickly as possible to get Allistaire to transplant. She said that the 5-year survival statistics for someone in Allistaire’s high-risk situation are equivalent for both those who receive donor marrow for their transplant as for those that receive cord blood. As I mentioned before, I asked about GVHD as an added danger with cord blood and she said that I could pick my poison – relapse or GVHD. Wow. Not good options. Either we go through all this and ravage Allistaire’s body all to have the cancer to come back again or we can go through all of this and ravage her body more potentially and have a better shot at the cancer not coming back. The theory with Graft Versus Host Disease is that it also has a GVL or Graft Versus Leukemia effect which is the idea that the new immune system can better identify and destroy any remaining cancer/Leukemia cells. My understanding is that cord blood is not matched with as many markers as donor marrow. Cord blood is only matched with up to 6 matches where as donor marrow can go up to 10 matches. I believe that this is because cord blood contains more elementary or foundational/less differentiated cells than does donor marrow. As a result of the reduced specificity of the match with cord blood, there is the perception that there may be more complications with GVHD but the potential benefit of greater GVL effect. The reasoning for viewing Allistaire as very high-risk is because she has relapsed AML which is an aggressive form of cancer and because of the fact that it came back in her skin. My heart was so heavy and I just really wanted to talk to Dr. Pollard, this kind face that knows us, has hoped with us and cried with us. I wanted to talk with someone who knew my child and not just the statistics about my child.
This Tuesday afternoon I was able to sit down with Dr. Pollard and get more clarification. She is in agreement with Dr. Woolfrey that we should move forward with the cord blood units for the following three reasons: they are available now and we do not want to delay transplant or expose Allistaire to more toxins in the form of another round of chemo, they are excellent cord blood units for Allistaire and there is apparently actually some data to suggest that relapse AML patients may have a greater success with cord blood transplants. The cord blood units are 5 out of 6 matches which statistically bears out that they are equally as good as 6 out of 6 matches. Additionally, they have a very large cell count – nearly 10 times what Allistaire would actually need. They base the cell dose on the body size of the patient and for reasons unclear to the researchers, transplants with high cell doses seem to move along a bit more quickly which in turn reduces the time frame in which the patient has no functional immune system and they are vulnerable to infection. In larger patients, two cord blood units are often used. The expanded cord blood that Allistaire received last week for the clinical study comes from cord blood units that are too small in cell dose to be used in transplant. Dr. Pollard suggested I may enjoy talking with Dr. Colleen Delaney who heads up the cord blood transplants. During the transplant process Allistaire will not have one assigned doctor because her care will no longer be disease-specific, but process-specific. However, Dr. Pollard thought Dr. Delaney might “hover” a bit over Allistaire if I were to talk with her personally. If you check out Dr. Delaney on the SCCA website, you’ll see she appears to be quite a smarty pants and probably a pretty great person to have “hovering,” over your child.
Allistaire being very high-risk is primarily due to the fact that her AML came back in her skin. She would be high-risk simply because she has relapsed AML. However, AML in the skin is associated with extremely poor prognosis. Man do I hate these euphemisms – “poor prognosis.” It’s like no one can bear to say she doesn’t have much of a shot at living. I suppose it’s hard for me too. I tend to say, “she may not make it.” It’s way harder to say that most people in her situation die and there is only a slim shot at her living. Apparently though it is not completely clear what Allistaire’s situation really is. According to the pathology report of her biopsy, the cancer cells were in her dermis and the sub-cutaneous layers, not the epidermis which is your skin. The data on AML in the skin is very limited because it is very rare and as such the numbers of consideration are small and cover a span of time. All of this to say that a clear prognosis for a patient with AML in the skin is limited by the fact that we are working with small numbers and even smaller numbers when you consider only those patients being treated with the current conventional therapies. On top of it, because Allistiare’s cancer cells are not technically in the epidermis, but in the layers beneath, it is unknown if the cancer cells in that location will respond to chemo and radiation more like cancer cells in the skin or like chloromas which are defined as solid collections of leukemic cells occurring outside of the bone marrow. The cancer cells in Allistaire’s lymph nodes are considered chloromas. I am told that chloromas typically respond well to chemotherapy.
Dr. Pollard also gave me some more specifics about the timing of the coming days and weeks. Transplant is dependent on Allistaire being in remission. Remission for Allistaire is determined by her bone marrow and the AML masses seen on her CT scan which includes the area on her back. Allistaire’s bone marrow started with 1.1% leukemic blasts and must be below .1% and ideally 0% to be considered in remission. Another CT scan will look to see if the masses are gone. If anything still shows up on the scan, biopsies of these areas will need to conducted in order to determine if the remaining cancer cells are dead or alive. As I mentioned, while Allistaire’s lymph node in her arm pit and the area on her back are tremendously reduced in size, you can still feel a little remaining. All of this testing will be done once Allistaire’s ANC has risen to 500. Basically you must wait long enough for the marrow to recover and presumably the cancer cells to recover from the chemo to see what amount of cancer remains. The other component dictating the timing of Allistaire’s transplant is the radiation schedule. Allistaire will receive TBI – Total Body Irradiation. She may also require more radiation to specific areas on her body like her lymph nodes and/or back. At this point, the radiation schedule allows Allistaire to start radiation on either April 4th or April 11th. She will be transported by ambulance to and from the University of Washington for her radiation. At this point I don’t have any details at all about her radiation. Dr. Ralph Ermoian, the radiation oncologist at the University of Washington, is planning on coming by tomorrow or sometime over the weekend to start the radiation discussion. I also don’t have any details about the chemotherapy Allistaire will receive as part of the “conditioning,” component of transplant. Doesn’t “conditioning,” sound so innocent, even nice? Myeloablation is the goal of all this conditioning, meaning the complete destruction of Allistaire’s own bone marrow. The SCCA docs decide what type of chemo regimen they will recommend. Sounds like I may hear about this relatively soon. So, it is possible that Allistaire could go almost directly from this round in the hospital into transplant.
From the point in time in which I began writing this post this morning, to now at past 11pm, we’ve had a new and serious development. Allistaire coughed. She coughed a few times and a tiny bit of clear liquid was seen running from her nose a few times. We almost immediately put into isolation which means Allistaire cannot leave her room. I can only leave her room to go in and out of the Unit. I am not allowed to use any common area or even access my food in the refrigerator. I have to ask the nurses or CNAs to bring me food and heat it up if necessary. That means no more riding bikes for Allistaire until she is symptom free. A nasal swab was ordered and it came back positive for RSV (Respiratory syncytial virus). For most of us this would not be something that would have much of an effect on us. For Allistaire it could lead to pneumonia and would absolutely delay her transplant until it is gone. I remember asking a nurse earlier in this whole cancer journey, “how do people actually die of cancer?” I just couldn’t quite understand what was the specific cause of death. Sometime it isn’t the cancer itself, but the utterly vulnerable place the “treatment,” puts the patient in. Pneumonia could be the death of Allistaire. So, here’s what I praise God for: that the staff here are totally a tune to the slightest symptoms to catch things early, there are procedures in place to help prevent the spread of sickness in the first place, they have super cool tests that can tell you exactly what sort of sickness is present and in this case, there is something they can try to rid Allistaire of the virus. Allistaire will be given Ribavirin, an anti-viral drug that kills the virus by interfering in “RNA metabolism required for viral replication.” She will be given 3 2-hour doses a day for five days. What this means is that she will sit under a tent-like set up on her bed for 2 hours while a nebulizer blows in the Ribavirin which she will in turn breath in. Though there is a tent, the Ribavirin will remain suspended in the air in the room for up to one our after each 2-hour dose. During this time I must wear a mask, am recommended not to wear my contacts, cannot be pregnant or trying to get pregnant.
So here we are. Ironically I gave this post the title, “Vulnerable,” this morning before I had any clue Allistaire was sick. It feels like Allistaire’s life is a bit more precarious than it was before. Will she be in remission? What in the world will this horrible chemo and radiation due to her body? Will GVHD take her down? Will RSV prevent her from ever getting to transplant?
Allistaire was discharged from the hospital on May 2, 2012 at the end of her treatment for Acute Myeloid Leukemia. She was doing great but we had to wait a few weeks before she could have the little, “line pull,” surgery in which her first Hickman catheter was removed. In those two weeks we had a bit of fun including a bike ride along Alki beach in West Seattle. When we were all done I had Allistaire sit in the grass next to the car while I attempted to get her tricycle in the trunk. It fits, but only one way and I can never seem to remember which way. I had been turning it this way and that for a few minutes when I looked over and did not see Allistaire. I frantically looked all around and was horrified to see her standing in the middle of the road – a relatively busy road. I was shaking as I buckled her into her car seat. A few months later she was eating lunch and nearly choked to death on a slice of strawberry. Both times, I could not believe that my child may have survived cancer only to nearly die from some little thing or stupid mistake on my part. Both times God reminded me that He always holds Allistaire’s life. On one hand she is always vulnerable, far more vulnerable than I realize and on the other hand, God is always holding her. Allistaire belongs to the Lord. The Lord God is the giver of life and only He can righteously decide when our lives will end. Our lives will end and it is His prerogative to determine when that will be. No matter what assails my little beloved, she is secure in the Lord’s hands and He will keep her here with us until He sees fit to bring her home to Him. It is easy for me to have downcast eyes that sees life only from the vantage point of this temporal plane. But ever He exhorts me, “lift your eyes.”
I remember being where you are now. At one point, I felt like I might punch the next person who uttered the phrase “very high risk”. I heard so many statistics and numbers and they seemed to always be overwhelmingly not in our favor. I sought second and third opinions and eventually just had to trust that these doctors at the SCCA knew what they were doing. They understood her disease better than I did and ultimately, they wanted the same outcome that we did. We were blessed to have found ourselves where we needed to be, at this top notch center, with some of the best doctors in the field. I continually looked for stories of hope, to help anchor down my fears, because even though the statistics were disheartening, the situation was never hopeless. I appreciated the parents who reached out to me and offered their experiences; the ones with children who also went to transplant under “less than ideal/very high risk” circumstances, the ones who despite the harsh treatment were thriving, years later. I held onto those stories as they were living out my own hopes and now, I suppose I can say that Olivia is living out those hopes too. We can not predict the future and the worry never really fades but her experience has been one with few complications thus far. She does have GVHD but it is mild and requires no systemic treatment. She was off all immune suppressing medication by 7 months out. She received the most toxic conditioning and type of transplant available to combat the aggressive nature of her disease and right now, 15 months later, she is thriving – a toddler to the max. As with most other things related to cancer treatment, the little ones tend to do very well. She did not emerge unscathed, none of us did, but she is happy and alive and in that regard, her treatment was a success.
“But then, some kids just sail through…”
I remember Olivia’s doctors saying those words to me after they outlined all of the potential horrors that lay ahead in great and terrifying detail. As I signed all of those papers while my sweet girl happily played totally unaware of what stood before her. As I could literally feel my heart breaking into a thousand sad and scared and hope filled pieces. “Some kids just sail through”. She sailed. I pray the same for Allistaire every day.
Oh Rachel – thank you. Thank you for those hours and minutes and days in the halls those 15 months ago as we watched in awe at how much Allistaire and Olivia were alike. Thank you for relaying how well Olivia has done. Just as often as I’ve heard the words, “some kids just sail through,” I’ve also heard that we see the worst because we are inpatient and we don’t see all the folks on the “outside,” doing well. I get that and yet almost everyone I’ve known with AML has relapsed. Of course these are still small numbers but nevertheless hard to see. I get angry at the transplant board. Most of the pictures are old and at least a few of them are of kids I know who have died. We need to know the good stories. So thank you. And thank you for your prayers! Much love to the four of you!
I’m not sure if you read these replies but I hope you know we are here for you. I remember meeting you in December 2011 as our kids were at Children’s. Mason having gone through transplant and then having a lump in his leg. We watched as Allistaire road the little bike around the unit and I was drawn to you both. I came out and we walked and talked for a bit. Reading this reminds me of the same fears I had going into transplant for Mason. Will he have kids? probably not. How bad will his GVHD be? We know that a little can be a good thing, too much a bad thing and not having it at all.. well.. can be good or bad. He has had a little GVHD for a long time. He is considered to have chronic GVHD but it’s been manageable and unless you knew his story, you would not know he had it. Total body irridation. He made it through, he loved the ambulance ride and the people at the UW were extremely sweet to him (as they are everywhere we go).
This is our journey. Not by choice because who would choose this? But because God says he has a plan for us. He asks us to trust Him in EVERY situation. It was the toughest lesson I learned yet it was the best lesson I learned. I live a day at a time still. I slow down and enjoy both of my children and my husband. I am so much more thankful for what I have, not in possessions but in love! I pray to Him that Allistaire will kick cancer’s butt. I pray to Him that He helps bring you an inner peace. A friend gave me a short phrase that I find has helped me through: “Sometimes God calms the storm, but sometimes God lets the storm rage and calms His child.”
Much love to you all!
Praying, praying, praying. RSV clear quickly. ANC bounce back. Hold Jai and Sten and Solveig and Allistaire so very, very close, Lord.
This is all so familiar to me, but I was always the nurse, not the parent. I love Julie and Colleen and Ann. 5/6 match is a good match. Praying that the exact right cord blood will be chosen from those matches. I’m sure you are already planning something like this, but as a nurse, I loved participating in family/friend/colleague prayer over the kiddo and the transplant (donor or cord) before I hung it in the patient’s room. It was always startling to realize that it’s treated medical procedure-wise like any old blood product transfusion. It always seemed so much more precious and deserving of special treatment than other products.
I need to track down the cord blood registry and make sure our info is updated. We donated my son’s cord blood 11.5 years ago. We’ve moved so many times, I don’t know if it was ever needed.
It was so lovely to see Solveig on Monday. I love seeing Allistaire’s sweet, sweet smile with her sister in these photos. Something about that grin reminds me of her grandma (Kathy).
Continuing to pray and hold Allistaire and all of you up to the Lord as He works in mighty ways in all of your lives to shine His glory through all of you to all of those around you. ((hugs))
Jai – You do not know me; Tammy and Kelly Hall are my daughter’s godparents, in addition to being dear college-era friends. Tammy emailed us a request to pray for all of you as you left Bozeman and headed to Seattle. I want you to know that you, your daughter and family have many prayer partners in the states of WA, CA, NC and OR.. My husband and I ring a prayer bell for Allistaire every night as we lift up her name and my walking group prays for her every day as we walk. It is clear from your blog postings that you are a brave and Godly woman who has been blessed with an amazing child who in turn has been blessed by an amazing mother. In hope of beautiful horizons – Phyllis Rigg
Praying, praying, praying….
Love and hugs.
Praying and hoping and lifting up my eyes with you, Jai.
Praying, praying, praying.
Jai, I know I’ve only met you a handful of times, but you have been more of an encouragement to me than you know. I briefly met Alistaire once, right before she was diagnosed for the first time. Kyle and I both remember her scooting around backwards on your in- laws deck as she learned to walk. What a joy she is! I pray daily for you all. Specifically, that The Lord will heal her, that he will sustain you and Sten, that your sweet daughters will have many more years together, but above all that you will rest in The Lord. I know it is much different, but I remember my mothers battle with cancer. She made Heaven so real for me, even to this day. I pray it’s MANY years before you meet your daughter in Heaven, but through this trial remember the perfect healthy body The Lord has for her.
Jai, I keep thinking of the words to a song (It’s Scripture too) for you and Sten: Thou, O Lord, art a shield about me. You’re my glory and the lifter of my head.”
Just read this tonight and will be praying for you to rest in the Lord, despite all this uncertainty.
I was in tears reading about Dr. Park’s encouragement. Amazing how God intervenes when professionals/insurance companies render us hopeless. Also, pneumonia is the “leading cause of mortality” with Jaron’s completely different disability. It’s a horrible dreaded word in our house too. Can’t believe we’ve reached 3 (in 9 days)! What a blessing to have these precious ones with us, the most challenging 3 years of our lives! Thank you for sharing your journey so eloquently, you’ve been an inspiration to me! I thank God for you 🙂
Jai, how is it that you encourage me in The Lord while you face unimaginable circumstances? I’ve never even been in Allistaire’s presence but I read the story of her life shocked by the stark brevity of life meanwhile drawn closer to our loving father for whom I have so many hard questions. I am baffled but encouraged. I pray for you with the most heartfelt and earnest of prayers I can muster. May the Spirit of our father tend to your every need and may God accomplish his purposes. My family’s collective heart and prayers are with you.